MDA’s myMuscleTeam is a free and simple way for families to receive strength from a personally created community — their “Muscle Team” of family and friends. Users can create private, secure Web pages to keep family members and friends updated, as well as recruit and schedule assistance with caregiving tasks.
Walking the Line Between Caregiver and Life Partner (November 2013)
Beyond Willpower: Caring for a Brother and Mother with MMD (October 2013)
To My Caregivers: I Accept Your Love (October 2013)
Getting Care: There’s No Place Like Home (October 2012)
Caregivers: Teaching Independence (October 2011)
Couple with FA Are Each Other's Caregivers (October 2011)
A Dozen Ways to Ask for Help (October 2010)
One Giggle at a Time (October 2010)
A Happy Compromise (January 2010)
In Sickness, in Health and in Love (January 2010)
Caregiver Exercises: Simple Ways to Resist Injury (April 2009)
Plan Ahead for Emergencies (September 2005)
Parent-Caregivers: Learning to Let Go (November 2004)
Taking Time Out for the Rest of Your Life (June 1999)
Caregiving Technology Offers Safety, Security and Peace of Mind (November 2010)
New MDA Website Seeks to Lend a Hand (May 2010)
Robotic Caregiving Assistance Becoming a Reality (July 2009)
Role Reversal: When Children Care for a Parent with ALS (December 2008)
Give It a Rest: Tips for Sleep-Deprived Caregivers (December 2001)
myMuscleTeam: Learn How to Set Up a Personal Care Community (webinar)
MDA's care coordination service, myMuscleTeam, is designed to help you harness the strength, support and assistance of family and friends. Learn how easy it is to set up a private and secure myMuscleTeam community, and be introduced to the site's features and how they can help both you and those who care about you.
Hey! I’m Here, Too (available online only)
A booklet to help siblings of children with muscular dystrophy explore how they feel about themselves and their families.
Learning to Live with Neuromuscular Disease: A Message for Parents (available online and in print)
This message to parents includes topics such as the importance of reaching out, when family doesn't understand and more.
MDA ALS Caregiver’s Guide (available online and in print)
Although the guide is specific to ALS, many of the tips and information shared are universal for all caregivers.
Meals for Easy Swallowing (available online only)
The guide includes recipes for easy-to-swallow foods, swallowing tips and techniques, and is geared toward individuals with ALS and others with swallowing difficulties.
Preparing for Emergencies: A Checklist for People with Neuromuscular Diseases (available online and in print)
The brochure contains valuable information about planning ahead for emergencies.
A Teachers Guide to Neuromuscular Disease (available online and in print)
An excellent resource for teachers with students affected by a neuromuscular disease, and a helpful guide for parents navigating educational advocacy issues.
Identifies programs to help pay for prescription drugs, food and health care.
Caregiver Resource Network
Caregiver stories, respite care information, caregiver health and wellness, and a listing of links to other online resources for caregivers.
Family Caregiver Alliance
Caregiver information and advice available, along with online caregiver discussion group, and a directory of programs at the national, state and local levels.
Full Circle of Care
Support for family caregivers, including respite services and eldercare.
Hospice provides extensive support to caregivers faced with end-of-life care of a loved one. Site includes a directory of hospice programs across the country, eligibility requirements and suggestions about how to choose a hospice program.
Resources for patients, children and caregivers related to end-of-life care and bereavement.
Medicare Caregiving Resources
The Medicare site provides a caregiver-specific section, offering a caregiver’s guide, assistance with billing and navigating Medicare, and other care options.
National Association of States United for Aging and Disabilities
Provides a state listing of Aging Resource offices that offer local assistance to caregivers.
National Caregivers Library
Offers articles relating to legal matters, housing and transportation issues, end-of-life decisions, care facilities and more.
National Respite Network
Use the locator tool to find state and local respite services.
Rosalynn Carter Institute for Caregiving Scholarships
Four $2,500 scholarships will be awarded through the Mattie J.T. Stepanek Caregiving Scholarship program.
Share the Care
The original model for organizing and maintaining a volunteer caregiving group.
Strength for Caring
Resources include a caregiver’s manual, state resource guide and an online caregiver community.
A digital magazine, resources and caregiver discussion forum.
Well Spouse Association
Support groups, online discussion forums, recommended reading list for caregivers, resource guide and online mentor program.